Sunday, March 4, 2018

30th Anniversary

It's the 30th anniversary of my diagnosis.

At the time, I was so excited -- it had a name, that must mean they could fix it.

How wrong I was.  30 years later, still no treatment, still no cure.  Still a lot of people who think I'm just faking or lazy.

Bah humbug!

Saturday, February 24, 2018

ME and Eye

Source: University of Leicester
Date: September 2017. Online: February 15, 2018

Ophthalmic correlates of Myalgic Encephalomyelitis (ME)/Chronic
Fatigue Syndrome (CFS)
Nadia Sultana Ahmed
- College of Life Sciences, Dept. of Neuroscience, Psychology and
Behaviour, University of Leicester


Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a
chronic, debilitating disorder. With the exception of disabling
fatigue, there are few definitive clinical features of the condition.
As a consequence, patients often have difficulty gaining an
appropriate diagnosis. As such, identifying distinct clinical features
of ME/CFS is an important issue. One under researched area of
ME/CFSassociated symptoms concerns problems related to vision. People
with ME/CFS consistently report a range of symptoms related to the
quality of their vision including pain in the eyes, hypersensitivity
to light, difficulty focusing on images, slow eye movements, and
difficulty tracking object movement. However, there has been little
attempt to verify patients' self-reports using objective methods. The
purpose of the experiments presented in this thesis was to determine
the effects of ME/CFS on: (i) performance on a range of tests of
visual sensitivity and (ii) the morphology of the retina. Compared to
controls, the ME/CFS group exhibited reduced accommodation, larger
pupil diameters, reduced colour discrimination and poorer contrast
sensitivity towards lower spatial frequencies. Thinning in the
photoreceptor layers of the retina (the Outer Segment & the Outer
Nuclear layer) was also apparent. These findings support the claims of
people with ME/CFS that they experience problems related to their
vision and its function. They also represent a potential marker of
ME/CFS that may aid in its diagnosis.

(c) 2018 University of Leicester

Friday, February 9, 2018

ME/CFS, NLP and the Lightning Process™ in the Looking Glass

ME/CFS, NLP and the Lightning Process™ in the Looking Glass
by Nancy Blake
Positive Health issue 244 - February 2018

Some extracts:

"Now suppose you have a broken leg, and I am so good at NLP trance
induction that I can stop you feeling the pain.

If I do this, so you start walking on it and don't bother to get it
set and in a cast, you are going to end up with a terribly deformed
and constantly painful leg. Ethical?"


"If you use NLP techniques to get rid of a headache that is caused by
a brain tumour, your 'help' may mean the patient doesn't bother to get
it properly diagnosed, and could cost him his life."


"The judgement about the use of NLP for the treatment of ME/CFS hinges
on whether we believe the psychiatric model…that the original viral
illness is completely over, and exercise is avoided because of
irrational fears…or the medical model which observes the continuing
relapses following exertion and concludes that this is evidence of a
continuing latent infection."


The presuppositions of the Lightning Process™ are the ones which
underpin Cognitive Behaviour Therapy and Graded Exercise Therapy: that
ME/CFS involves only thoughts and beliefs which, if changed, can
result in recovery. The patients' belief that there is an underlying
physical cause, and that exertion can do actual damage is considered
to be false. Treatment, therefore, can be successful if (and only if)
this belief can be eradicated.

The Lightning Process differs from CBT/GET in that adds the use of NLP
techniques to change beliefs and encourage the patient to give up his
protective energy-conserving behaviour, his physical aids, and
enthusiastically engage in exercise.

This would make it very effective indeed if the patient's symptoms
were caused only by unhelpful thought processes.

It makes it potentially harmful if the patient's problems are in fact
caused by a pathogen which is stimulated by exertion, and which the
immune system can only fight effectively if the patient rests so that
all his physical energy is available for the immune system.


In relation to ME/CFS, what are the 'impossible things' one must
believe (and what must one refuse to believe) in order to maintain the
view that ME/CFS is, in Simon Wessely's words, "nothing more than the
belief that one has (ME)"?[4]


You have to believe that people with no previous history of a mental
health problem or of undue complaining about their health, and no
preceding traumatic event other than a mild flu can become completely
incapacitated within days, and continue to be so, simply because of
negative thought patterns about minor symptoms.

You have to believe that intelligent, highly educated, successful
professional people, including professional athletes, can suddenly,
for no apparent reason, become extreme hypochondriacs, whose reports
about their illness are either false or exaggerated.

You have to believe that for such people, the 'secondary gains' of
assuming the role of invalid are somehow greater than loss of their
profession, their income, their home, and often their families.

You have to disbelieve what patients report about their experience,
even though patient descriptions of this very complex disease are
similar across historical periods and disparate geographical
locations. Patient experience, although varied in some ways,
consistently reports that exertion brings on worsening symptoms, and
that continued exertion brings on more permanent and serious relapse.

You have to believe that encouraging or coercing patients into doing
something which is known to make them worse is a 'safe and effective'
way to cure their illness.

Tuesday, February 6, 2018

How Sexism is hindering medical research

February 7 2018 - 12:00AM

How sexism is hindering medical research
Naomi Chainey

As recently as 1921, MS (multiple sclerosis) was erroneously
considered more common in men. By the late 1940s, a more even gender
split was presumed. By 1960 it was posited that women might actually
be slightly more prone to the condition. With the invention of the MRI
- a more objective diagnostic method - we now understand MS to be
three to four times more common in women.

So, back when physicians were making their diagnoses based on symptoms
rather than scans, why was MS being missed in women? The answer,
perhaps predictably, is that when men and women presented to
clinicians with similar symptoms, men were likely to be diagnosed with
an organic illness, while women were more vulnerable to a misdiagnosis
of hysteria.

Popular late 19th and early 20th century treatments for MS involved
antibiotics, syphilis medication or blood coagulants, while hysteria
was treated with vibrators (yes, vibrators), hypnosis, or, if you were
very unlucky, an insane asylum, so regardless of diagnosis, no one was
receiving effective medical care. The gendered assumptions would have
had a social impact, however, and indicate that men were historically
considered more reliable as witnesses to the functioning of their own
bodies than women.

As well as being a cautionary tale on condescending, paternalistic
medical approaches to women, misperceptions about the male to female
ratio of MS have had implications for medical research. Sex disparity
in an illness can provide a starting point for unravelling the
mechanisms behind it, and scientists now believe that high levels of
testosterone may be protecting men from the disease.

"This is why it's vital to study sex differences in research," says
Melissa Brown, PhD, the lead researcher on a recent study from
Northwestern Medicine demonstrating that testosterone causes a cascade
of reactions in male mice. These eventually prevent the development of
the immune cells which attack the myelin in people with MS.

It's a discovery which could never had been made had we continued in
the belief that MS was more common in men, which begs two questions:
How much earlier might this discovery had been made if women had been
diagnosed correctly from the start, and what gendered assumptions are
we still making that might be standing in the way of similar

My own condition, ME/CFS (also called myalgic encephalomyelitis or
chronic fatigue syndrome), is, like MS, up to four times more common
in women and shares other characteristics such as immune, cognitive
and gut dysfunction, intermittent paralysis, fatigue and chronic pain.

ME/CFS was labelled hysteria as recently as 1970 by two psychiatrists
whose logic went: "there is little evidence of organic disease
affecting the central nervous system and epidemic hysteria is a much
more likely explanation. The data which support this hypothesis are
the high attack rate in females compared with males."

The paper they published had a significant impact on the research that
followed, with scientists focused on discovering biological causes
finding that their funding had dried up and governments prioritising
research into psychiatric interventions (research now being held up to
unfavourable scrutiny by the scientific community).

As it was with MS, new technology is now unravelling the biological
mysteries of ME/CFS. However, it was only last year that the CDC
finally removed its recommendation that patients engage in psychiatric
interventions. Those interventions remain the standard in Australia
with claims for the Disability Support Pension and NDIS routinely
rejected if applicants have not engaged in (often) expensive, debunked

People with ME/CFS are not the only ones impacted by the ongoing
dismissal of women's perception of their own health.

In her paper for the Berkeley Journal of Gender Law and Justice "The
Resurrection of Female Hysteria in Present-Day ERISA Disability Law"
lawyer Cassie Springer-Sullivan states: "Although I represent women
and men with many different disabilities, I have been surprised to
find that many of the disabled women who come to my firm seeking legal
representation suffer from illnesses that are typically labeled
"women's illnesses," such as fibromyalgia and lupus … I believe that
this is because disability insurers often presume (incorrectly, in my
experience) that women suffering from these types of illnesses are
magnifying their symptoms or just have a low pain tolerance."

In addition to saving money for insurance companies, the widespread
downplaying of women's pain continues to result in delayed diagnosis
and treatment. Upon presentation to an emergency room it still takes
women 16 minutes longer than men to receive an analgesic for acute
abdominal pain. A diagnosis of endometriosis, a painful condition
impacting women's reproductive organs, still takes a whopping average
of 7.5 years from the time symptoms first present, as complaints are
consistently attributed to normal menstrual function.

While women with a variety of ills may find themselves subject to
dismissive assumptions about our experience of pain, it's important to
note that hysteria itself is not just a relic of a less enlightened
historical medical practice. It's gone through a facelift and a name
change, but people who present with unexplained neurological
complaints may still be diagnosed with conversion or somatoform
disorders, the assumption being that if current technology can't find
the cause, symptoms must be psychological.

It's estimated that women are up to 10 times more likely to receive
the diagnosis than men.

I wonder how this will be viewed next century.

* * * * * *
When I first got sick, my boss and I had similar symptoms; mine were worse.  His doctor took him seriously, even putting him on a plane to another city for further testing; mine assumed that the initial normal test results meant I was faking because my husband wouldn't let me quit my job, and saw no need for further testing, even when I asked for a specific test.

Comparing notes several months into the process, we sat in stunned silence, just staring at each other -- society may have been starting to treat women as equals, but doctors were still stuck in the mindset that all women secretly want to be housewives.

Even in the current millennium, I still run into doctors who think women don't want to work and will lie to get out of having to do it.  The idea of a careerwoman appears foreign to them.  And they still won't do a test specifically requested.

Thursday, February 1, 2018

The dysfunctional autonomic nervous system in ME/CFS | 24 January 2018

MEA Summary Review: The dysfunctional autonomic nervous system in ME/CFS | 24 January 2018

ME Association

January 24 at 1:17pm ·

Two research studies recently reported similar findings relating to
the autonomic nervous system in people with ME/CFS. Both related to
sleep and build on existing evidence suggesting that a dysfunctional
autonomic nervous system (also known as dysautonomia) is perhaps
creating or exacerbating some of the symptoms that may be associated
with ME/CFS.

Friday, January 19, 2018

Sexism stunts medical progress

Rosario: Sexism stunts medical progress

Unrest, a new documentary, explores the stigma surrounding chronic
fatigue syndrome.
Isabella Rosario
Jan 18, 2018

Last semester, I began experiencing unrelenting fatigue and muscle
pain like I had never felt before. For weeks, I could barely go to
class or even stand to do the dishes. I begrudgingly made an
appointment at UI Student Health & Wellness.

The day before my appointment, I went down the rabbit hole of Googling
my symptoms. One result I came across was chronic fatigue syndrome.
When I brought up the possibility of the condition at my appointment,
the doctor chuckled and told me that it was not a real illness. He
said my symptoms were most likely the physical manifestation of
depression or anxiety — i.e., it was all in my head. He gave me a
handout for University Counseling Service and sent me on my way.

Soon after, I visited my primary-care doctor back home, tested
positive for pneumonia, and was promptly given antibiotics. So much
for "all in my head."

Fast forward to last week's PBS release of Unrest, a documentary by
Jennifer Brea. She was a Harvard Ph.D. student preparing for her
upcoming wedding when she was struck with a high fever. After the
fever broke, Brea experienced dizziness, recurrent infections, and
debilitating neurological symptoms. Her neurologist diagnosed her with
conversion disorder. He said Brea's physical symptoms were in response
to some psychological trauma she may not even remember.

Brea was eventually diagnosed with myalgic encephalomyelitis, more
commonly known as chronic fatigue syndrome — a very real illness twice
as common as multiple sclerosis and recognized by the World Health
Organization since 1969. Directing from her bed, Brea interviews
people from around the world with the condition, which causes fatigue
that does not improve with rest, memory problems, widespread pain, and
more symptoms that range in severity; 25 percent of sufferers are
either housebound or bedbound for long periods. And yet, they are
continually dismissed and disbelieved by doctors who psychologize
their symptoms—especially if they are women.

I hadn't heard of conversion disorder prior to my appointment at
Student Health, or at least I thought I hadn't. It was originally
called hysteria, which Plato described as women's uteruses "blocking
passages, obstructing breathing, and causing disease." In the 19th
century, Freud dropped the uterus component and instead theorized that
people could subconsciously convert psychological pain into physical
symptoms — which is exactly how my first doctor explained my symptoms.
Today, hysteria — renamed "conversion disorder" — is diagnosed two to
10 times more in women than in men.

And so it comes as no surprise to me that ME/CFS — an illness two to
four times more common in women — is not taken seriously by the
medical community. It comes as no surprise to me when I hear stories
from female friends who have had doctors dismiss their fevers or
coughs as stress-related. Multiple sclerosis was diagnosed as
hysterical paralysis until CAT scans revealed brain abnormalities. Why
are we repeating this narrative with ME/CFS almost 50 years into its
recognition by the World Health Organization? Why is it that when
doctors do not immediately have the answers, they assume an absence of
biological cause?

I do not believe the medical community is full of raging sexists.
Rather, my experience and viewing of Unrest illustrated to me how
incredibly human doctors are — how they are susceptible to unconscious
biases and sexism in the same way all of us are. And how they, in
congruence with society, would rather offer easy explanations for the

As we embark on a new semester, I hope we can open our minds to the
diversity of others' experiences and the class material presented to
us. With persistent curiosity, our generation can be the one that
looks deeper than hysteria and other flawed explanations for what we
do not yet understand.

Tuesday, January 16, 2018

NIH Striving to Avoid False Hope

NIH Striving to Avoid False Hope in Chronic Fatigue

Director Francis Collins, MD, PhD, talks about his agency's priorities

by Joyce Frieden, News Editor, MedPage Today January 16, 2018

BETHESDA, Md. -- The National Institutes of Health is trying hard to
bring real hope -- not false hope -- to patients with myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS), NIH director
Francis Collins, MD, PhD, said during an exclusive interview with
MedPage Today.

"Five years ago ... there was this big excitement that there was a
retrovirus that was turning up in people with CFS, and initially it
didn't appear to be in people who were unaffected," Collins said
Friday during an interview at the NIH main campus, at which a
communications staff member was present. "It was a funny retrovirus
that had only been seen in cultured cells in the lab, and maybe in
mice, [and it was] called XMRV."

"It was really exciting because it was a retrovirus, and we have drugs
for retroviruses! It got published in Science to great excitement, but
then almost immediately other researchers looking at very similar
patients said, 'We don't see this' or maybe 'We see it in people who
don't have the disease,'" he continued. "We mounted a careful
multi-site study funded by NIH with blinded samples to try to see
[whether] this [held] up and sadly, it did not. That was such a blow
to a community of suffering people who thought, 'Finally, they're on
to something.'"

Collins said he has been "greatly moved and troubled" by the stories
of CFS patients, "especially when many of those stories start with
people who are highly active, and many of them fairly athletic, and
some illness that sounds viral, like a really bad flu, hits them, but
they don't get better ... Many of them are unable to resume normal
activities and end up bedridden for months or years."

In September, NIH awarded $7 million in grants to three clinical
centers and a data coordination center to continue ME/CFS research.
"Some people have said, 'Your three centers are all doing the same
things,'" he added. "Yeah, that's intentional; we want to see
immediately if something looks like it's promising, is it promising
really, or another false positive? We've had too many of those and we
don't want to make that mistake again."

In addition, "I moved the program out of the place it was at NIH,
which was at the Office of Research on Women's Health," he said. "It
is true that women are affected more than men, but that was seen as
not a particularly important place for an important disease to be."

Collins asked Walter Koroshetz, MD, director of the National Institute
of Neurological Disorders and Stroke (NINDS), to head up the NIH's
research effort, and NINDS senior investigator Avi Nath, MD, "to start
a protocol in our clinical center to bring people with this disease
for an intense 1 or 2 weeks of just looking at every possible cause.
And that's led to a big uptick in the amount of research that's going

Although the medical community has been criticized for not taking
ME/CFS seriously, "it's very hard for me to see how [that criticism
is] fair when you hear stories of people who've gone rather suddenly
from a full life to bedridden status -- something dramatic happened
there," said Collins.

He added, however, that "there are problems [in that] CFS has become
such a blurry diagnosis, that in there amongst hundreds of thousands
or millions of people who carry that diagnosis is a whole
heterogeneous group and there may be individuals ... who have
something else entirely or even people who are suffering from
depression and are therefore feeling fatigue for that [reason]. I
think that's added to the difficulty that the medical care system has
had coming to grips with this as a real disease that has a desperate
need for new treatments."

Thinking Big on Cancer Cures

Collins also expressed excitement over the additional funding --
granted under the 21st Century Cures Act -- that his agency will have
for the "cancer moonshot" project. "We're thrilled to have the
opportunity to push this even faster," he said. "It builds upon a
foundation of cancer research that's been going on for a long time ...
[It gives us] about $1.6 billion over 6-7 years to add to what was
already available for cancer research."

What is NIH doing with that money? "We convened 2 years ago a group of
highly expert cancer research visionaries -- from academia, the
private sector, and advocacy [groups] -- and said, 'OK, guys, what do
we need to do that we're not already doing? Think big, think bold;
don't worry about risky projects if they can pay off,'" he explained.
"They provided a blueprint of where we needed to go, a series of about
28 initiatives. Those have been our guiding documents to crank this

Immunotherapy is one of the big areas the researchers are focusing on,
he continued. "You can't help but look at some of the amazing success
stories of cancer immunotherapy of people who had widely metastatic
disease and are now cured without going, 'Wow, we are really onto
something!' -- after all of these years of trying to figure out
whether this could work. For leukemias that used to be refractory, and
with lymphomas that failed chemotherapy, immunotherapy is looking
really good."

"The challenge is, how do we take those successes and expand the
success rate to solid tumors where this just really hasn't paid off
yet -- pancreatic cancer, colon cancer that's already metastasized,
breast cancer, prostate cancer?" Collins said. "But cancers are very
clever and they hide their abnormal proteins, telling the immune
system, 'There's nothing to see here.'"

"So we have to help the immune system recognize trouble, and that's
led to a host of these really dramatic new technologies like CAR-T
cells, now approved for two different applications by FDA but still
not yet for solid tumors; that's the big frontier. But it ought to be
possible to do that ... and that's where a lot of the moonshot money
is going."

Working with Commercial Partners

One way to speed up these therapies is partnership with industry, he
said, "but they have the same frustrations about why it doesn't work
... So we need to have a better biological understanding of that
process, basically biomarkers that will be predictive of whether a
particular immunotherapy is going to be successful or not. We don't
have those."

"After talking to industries that are most engaged over the course of
more than a year, this has developed into a formal partnership: the
Partnership for Accelerating Cancer Therapies, in which 11 companies
all agreed to take part and contribute $5 million each ... so they're
putting money on the table, and partnering with NIH with a very
explicit set of goals," Collins said. That partnership launched in

As great as some of the new therapies are, sometimes they stop working
after 9-12 months, so researchers want to know "What's the mechanism
of resistance, and how can we avoid it?" said Collins. "Do we need to
do the same thing we do with HIV or tuberculosis -- hit them with two
or three drugs at once instead of one at a time? Cancer may have that
same propensity to develop resistance if you don't have that full army
at work, so combination therapy is very much of interest as well."

As for the word "moonshot," "It is helpful to have something that
people can immediately identify -- 'Oh, that's what you're talking
about!'" he said. "And if it sounds inspiring, exciting, promising,
that's even better. There were discussions about whether that's the
best label, but that's what [former Vice President Joe Biden] wanted,
and it's in the legislation, so I guess we're going to stick with it."

Precision Medicine ... for All of Us

Another term that gets a lot of discussion at NIH is "precision
medicine." Collins recalled that he wrote a book in 2010 called The
Language of Life: DNA and the Revolution in Personalized Medicine.
"That was the term I was using at that point."

"Then there was a National Academies [report] that looked at the
promise of all this," he said. "They didn't like 'personalized
medicine' because they thought it sounded like every decision, every
drug is going to be just for that one person, as opposed to
recognizing that if you take a million people, maybe for 50,000 of
them this is going to work and 30,000 need something else. So ... they
liked 'precision' better. That's the idea of taking a
one-size-fits-all approach, which most of medicine has been, and using
all the data available to be more precise about what's going to work
for that particular person."

"Ultimately, of course, one wants it to mean that all of us have a
perfectly designed program for preventing illness that we can follow
and it will keep us healthy, and if we're still unlucky enough to get
sick, there's a precise intervention available that's going to make us
better," Collins said. "And that is the goal -- I will not step away
from that goal, but we're certainly not at a point where we can claim
that's the case."

However, because the current initiative involves a nationwide program
that the NIH is trying to get a million people to join, "I don't think
we want to call it the 'Precision Medicine Initiative' -- we've got to
have a name that's more descriptive of what we're trying to do,
[which] is to learn as much as we can from as many willing partners as
we can. [So the name is] 'All of Us,' and I think we've done a good
job of branding it that way."

"A secondary meaning [is] 'all about us' in terms of of our medical
experiences, environmental exposures, diet, exercise, things we care
about, and things we don't care about," he continued. "We want those
million people to feel like they have embraced this program, that they
want it to succeed ... that they're going to get a lot of information
back about themselves, and that they're excited to be part of this
national adventure."

Collins is hoping that the results of the initiative won't take
decades to implement in practice. "One thing that will help here is
that at least half of the enrollees, as we currently imagine it, are
going to be involved in health provider organizations that are both
helping them engage in the research but are also their caregivers."

"That setup will be particularly relevant as far as getting access to
electronic health records, blood samples, their history of
medications, and so on, because they have those systems in place," he
said. "But we want everybody in the United States to be able to take
part if they want to, so there's also a direct volunteer pathway for
somebody who doesn't happen to be in one of those health provider
organizations, to call an 800 number, or go to the Web and sign up and
also get involved."

"We are very determined to make this a highly diverse million people,
in terms of age, gender, geography, race, ethnicity, and socioeconomic
status -- we want this to be the kind of view of the nation that will
also teach us things about health disparities."

Part of that work involves encouraging minorities to participate,
which has been an issue in the past, Collins said. "We've worked
really hard on trying to understand the reasons why that has been the
case, and how this project could be presented in a way that is

"We've brought on board a chief engagement officer, Dara
[Richardson-Heron, MD], an African-American woman, and she has been
fantastically wise about how to build those relationships in a
trusting way, and recognizing this doesn't have an easy history and we
need to be totally aware of that," he said. Part of the outreach
involves working with community health centers, whose patients are
typically of lower socioeconomic status, to encourage those patients
to participate.

To ensure that the All of Us project will launch properly, NIH has
been beta testing it since last May, Collins noted. "We've enrolled
over 10,000 people as test subjects to see whether the questionnaires,
the access to electronic health records, the security systems, the
blood samples -- whether everything is moving the way it should as we
bring online all these enrollment centers all over the country ... and
it's looking really good." As for a launch date, "We're saying in the
spring -- maybe by next month we'll be at the point of being able to
settle on a [specific] date."

Making sure the participants reap the benefits from the study --
especially if it results in high-priced treatments -- is an issue, he
said. "We can't, with this one study, solve [the problems of] our
healthcare system."

Collins noted that a New York Times article pointed out that Congress
seems interested in supporting research studies but can't agree on how
to make sure people have access to healthcare. "We can't solve that
but we can certainly try to provide for people to have access to this
study, which is going to give them information back about themselves."